Data Access and Reuse | Data Management and Sharing | Washington University in St. Louis
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The final step of the data lifecycle is data reuse. Data can often provide benefits far beyond the primary purpose for which the data were collected. Therefore, it is important that researchers can access and reuse data in order to maximize the potential utility.
There are several sources of data that can be accessed for reuse including:
Data shared publicly or with restricted access in a repository
Electronic Health Record (EHR) data
Administrative data (e.g. insurance claims)
Data shared with a collaborator under a
Data Use Agreement
On this page:
NIH Resources for Data Access
WashU Resources for Data Access
NIH Resources for Data Access
NIH has long valued making available to the public the results of research it supports and conducts. Allowing others to access data enables data reuse, increases transparency, and facilitates the reproducibility of research results. Browse the NIH-affiliated repositories and learn how to access different types of data
Accessing Scientific Data
Browse the variety of repositories for scientific data supported by NIH and select the link provided in the “Access to Data” column for instructions on accessing data from that repository.
Accessing Genomic Data
Learn what types of repositories exist for genomic datasets, how to apply for access to restricted datasets, and the responsibilities of users who download human genomic data from NIH databases.
WashU Resources for Data Access
The Washington University
Institute for Informatics, Data Science and Biostatistics
(I
DB) and Institute of Clinical and Translational Sciences (ICTS) provide access to EHR data, administrative data and genomic data for research purposes. See the list below for details and links for more information.
MDClone
MDClone
is a free, secure, self-service platform for building queries and downloading computationally derived (“synthetic”) data from I
DB’s research data core (RDC). Since the data do not contain protected health information (PHI), their use is not classified as human participant research.
Data Brokerage Services
The I
DB Core Services’ data broker team collaborates with BJC HealthCare’s Center for Clinical Excellence (CCE) to provide
data brokerage services
to BJC, WashU Medicine, and external agencies. The data broker team offers secondary data use and enrichment services focused on extracting data from electronic health records.
Research Data Core
The
Research Data Core
(RDC) is an IRB-approved service designed to meet the clinical and translational research needs of WashU Medicine and BJC researchers.
The RDC scope of support includes:
Review preparatory to research
Prospective studies
Regulatory reporting requirements
Retrospective studies
Quality improvement initiatives
Center for Administrative Data Research
DB’s
Administrative Data Core Services
provides leadership and training in using administrative data in epidemiologic, health services, and outcomes research. Refer to the CADR site for more details about the data sources and the research questions they are designed to address.
ICTS UK Biobank Genomic Repository
To facilitate genomic research, the ICTS Precision Health Function has established the
ICTS UK Biobank Genomic Repository
. This Repository includes genomic data for 500,000 participants from the UK Biobank and has been enriched through annotation by the McDonnell Genome Institute (MGI). Using the ICTS UK Biobank Genomic Repository allows researchers to access a curated and enriched version of the data. The Repository is stored with Research Information Services (RIS) within WashU IT and is available for access by all approved UK Biobank users at the School of Medicine.
Please complete our
Data Management and Sharing Consultation Request Form
if you have questions.
Resources
Data Management and Sharing Policies
Data Management and Sharing Plans
Research Data Management (RDM)
Human Participant Data Considerations
Data Sharing
Data Access and Reuse
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